What I Wish I'd Known When I Was Diagnosed with Celiac Disease

It gets easier, I promise

This coming April holds a big anniversary for me: it will be 20 years since I was diagnosed with celiac disease. Twenty years! If my diagnosis were a person, it would be old enough to vote, get married, or serve in the military. But I still remember very clearly how rough the transition was. Back in April 2004, I truly believed my career as a travel writer was over. I also thought I'd never be able to eat at a restaurant again. I was wrong on both fronts, but it took me a while to learn that, because I didn’t even know anyone else with celiac disease. I wanted to share some of the things I wish I had known when I was first diagnosed.

• Discovering gluten intolerance is a blessing, not a curse. For years before my diagnosis, I was plagued with medical problems that ran the gamut from migraines to joint pain. Post-diagnosis, my first thoughts were all about what I was losing, like the freedom to eat whatever I wanted. In reality, I was gaining a tremendous amount: freedom from the pain and suffering I'd gone through for years. Freedom from prescription medications that I didn't actually need. Freedom to eat and not be harmed by food. It took me a while to see that the diagnosis gave me more control over my life and my health, but that's what it did.

• The Internet is your best friend and your worst enemy. It's connected me with gluten-free people and groups around the world and it’s provided me with useful information. But it's also tried to feed me some misinformation along the way. There are some confused people online who write things like “Vinegar contains gluten!” (Not true, except for malt vinegar.) Some will tell you that you can't eat maltodextrin. (Wrong: it’s usually made from corn in North America, and the National Celiac Association says it’s safe to eat even when it’s derived from wheat. The fact maltodextrin starts with "malt" doesn't mean it has gluten.) There is no such thing as “growing out” of celiac disease—it doesn’t go away, no matter what people on Tiktok say.